I am officially "unreliable" if any plan is made that requires my presence before noon. I have actually missed several doctor appointments, missed following through to go with mom here and there. Spent much of my sping trip to Colorado sleeping. I find myself sitting and closing my eyes, no matter how many hours I sleep.
To make matters worse, my schedule is way off whack. If I lived on the East coast, I would be praised as an early riser. If I lived in Hawaii my timing would be perfect to arise around 9 am. Alas, I live in Seattle, the gloomy days are closely falling upon us, and I awake any time between 11 am and 2 pm.
Because my clock is off, I have a hard time falling asleep before 2 am, I work part time hours into the late evening and just cannot unwind fast enough. I need 12 or more hours of sleep per day and usually sleep through most of Sunday.
My trusted mental health professional and I are working on implementing resources to increase my energy, improve my sleep and cope with the heavy stresses in my life. I can't talk about it all, but somewhere along the line I made it a mission to do all I can to help others live a happy life. Nobody should leave this earth sad or deprived. If there is even a tiny thing I can do, I want to do it. I am however learning that my good intentions may be applied in the wrong places and at the wrong times.
In treatment we are now using the terminology "cancer related fatigue". This is another one of those things that most people believe goes away about 6 months after treatment stops. Not always true. People heal at their own pace and sometimes this healing time does not match the reality of day to day demands. Getting emotional support during these times is critically needed to find bridges and resources to fill in the gaps
In 2009, starting my first chemotherapy round with multiple toxic agents (carboplatin, taxol and cisplatin) I totally tanked and was in a deep brain fog, was lost and scared all the time. I had a very high level of anxiety, and multiple physical issues of abdominal pain, nausea, hot flashes, shortness of breath etc, that added to the fatigue from being poisoned and having cancer.
I regained some strength during my period of NED, but retained severe abdominal pain, severe sweating, nausea and fatigue. My overall cognition has improved. Eventually it came to be that I have some sort of panic disorder and the medications I take have helped with that, thankfully.
Being back on chemotherapy now for almost two years for my recurrence has compounded the fatigue. I have been counselled with great compassion that many women live long lives on chemotherapy. I feel alright with that now. I did not think I would, but as long as I can tolerate the side effects, I am all in.
During the second time around, with carboplatin desensitization we were able basically keep more tumors from developing, but the existing tumors were still growing. I think there are around 8, very small, but there nontheless. With Doxil we were able to stabilize the growth. I was on Doxil for approximately a year. Now on Avastin, we are hoping to shrink the tumors by cutting off the blood supply that feeds them.
I am seeing some improvement in my CA125, but am not counting too much on the number, just paying attention to the trend.
I have treatment tomorrow, and next month I am due for another CT.
We have a lot going on in our family, just like every other family that is not independently wealthy. Little time is taken to cross things off the bucket list, so to speak. We are getting there. I think all of us could use a real vacation!
To be honest, I have no bucket list yet. There are things I want to do, but my focus is family and maintaining self sustainability for as long as possible.
The one constant in my life is daily prayer. When I awake and when I get into bed, I pray. I thank God for each new breath and pray that others ask for Him to help them.
Please click on the link below for some information about cancer fatigue.
Love to you and yours,
Denise
